chemo for brain

[Celina]

Firstly, has anyone heard how Mary is doing? I keep thinking about her.

Secondly, I am travelling to Ottawa today so that I can be with my sister when she meets with rad. and onc. on Monday. I am printing off the posting from Joe regarding RSR13, in the event that she can do more WBR, but living in Canada I don't know how we could access that trial. Anyone know? I know that it must given prior to radiation, but I was wondering if anyone knew if one could receive it if they already had WBR?
Also, if they say that WBR and SRS are out of the question, I want to be able to ask about chemo. I can't recall the name of the chemo that is transmitted to the brain through a port. Mextra...something? I will check this site upon arrival to Ottawa.

My sister is feeling great these days. She hasn't had chemo since being pulled off Navelbine. (She will begin Xeloda once we get brain mets sorted). It is such a joy seeing her with the energy she needs to do some of things she enjoys. She's been visiting with friends, cooking, attending her boys' hockey games. She wasn't able to do that on Navelbine..the pain was too great. As always, she remains hopeful that she will be able to do radiation and live longer, until new drugs surface.

Thanks for all your support.

Celina

[Jackie]

I am currently receiving Methotrexate via an ommaya reservoir (port) which was inserted into my head to treat metastisis to the brain lining. Sounds so spooky, but the treatment is only about 10-15 min. (only 10cc is given), then you lie still for a bit to make sure you aren't going to have any side effects of nausea or dizziness. I had the first treatment Thurs with no side effects. Last summer I was received gamma knife (successfully) for 2 brain mets. It is my understanding that the meningea cannot be treated with sterotactic surgery (gamma knife and cyberknife). WBR will be the next recommendation should I fail to respond to the Methotrexate.

While I experienced no side effects from any chemo drugs for the first year after recurrence, I now have nausea and energy problems with most of them. Chemo fatigue, my onc calls it. If your sister starts on Xeloda, she might be very pleasantly surprised at how well she does. It's a gentle drug and according to my onc, they have now discovered that patients don't need the higher doses once prescribed. I went from full to half dose which was still very effective, but unfortunately had heart problems and had to stop. Other than that, I was beginning to feel just about normal. Sounds like there are a number of different paths her treatment plan might take, all of which might not make her feel as badly as she did on navelbine. Bless you for being such a good sister....I have one, too, and don't know what I'd do without her!! Hope everything works out well for your sister!
Love, Jackie
P.S. Have you considered enrolling in the Sister Study currently being conducted?

[StephN]

Celina -
You have all our thoughts and prayers with you on your way to Ottowa.

About the Allos trial (RSR13, I think the same). I printed out something from the net from Allos web site when I went to my first consult with my new rad onc brain specialist. This topic was at the end as WBR was not the plan we talked about going forward now.

His reaction was that they have seen other agents do well up to phase II trails and then not measure up to currently available agents in the phase III, so my Gamma center is inclined to wait for the next results. Although, he is hopeful and watching this one with great interest.

This tells me that there must be some other agents that facilitate WBR as well, but I do not have the specifics.
Anyone else shed some light on what else they may be giving along this line??

[Sandy H.]

Celina best wishes on your trip to be with your sister. I have been wondering about Mary as well. Hope we hear something positive soon. Sandy

[Christine]

Celina,
RGR13 is in Phase 3 trial and not yet accessible . It is in the final phase, but the exact date of ditribution is unknown. Try doing a search , Allos is the company sponsoring it. This drug increases the availbity of oxygen to the cells which helps to kill the cancer cells in the sight of radiation. iT IS GETTING GOOD SURVIVAL POTENTIAL IN MANY CASES! Check with your sisters Onc's Well wishes,
hugs to you both

[*_Christine_*]

To Jackie

So happy to see your post with good feedback, after your first treatment with Methotrexate. I am very delighted to hear you had no side effects too! Praying that you continue on this path to complete remission.
If ever you need more info, and I can be of assistance,, pleasr call on me!
Keep up your great attitude. Your Onc and you are quite a team.
Warm well wishes with hugs, Christine

[*_celina_*]

Ladies,

Thank you so much for your replies...I don't know what I'd do without this site as a source of information, guidance, support and most importantly, inspiration!
Steph, I will definetly ask about other possible drugs used to ehance the effects of WBR.
Christine, I will contact Allos to find out if they are still taking patients for the trial and whether the drug could be used on "compasionate grounds".
Jackie, it's so good to know of someone that is on Methotrexate. I will let you know if this is the path she will take.

It is not the time to give up....it is the time for her to welcome a new "plan of action". Her doctor places much importance on quality of life, as we do, but having hope is one of the most important factors in quality of life.

Celina

[*_celina_*]

actually, there is a contact for SRS13 clincial trial in Ontario. Unfortunately, the criteria states no pevious radiation...I'm disappointed.